P1728: THE FUTURE OF MYELODYSPLASTIC SYNDROME – PATIENT PRIORITIES AND OUTCOMES THAT MATTER
Authors: M. Poynton, C. Hamilton Gilmour, I. Dale-Harris, E. Clarke, S. Stanworth, M. Murphy, N. Roy
Journal: HemaSphere (2022)

Background: Without a definitive curative option available to many patients, learning to live with myelodysplastic syndrome (MDS) and manage symptoms effectively becomes a priority in their care. Anaemia is an almost universal feature of MDS but other cytopenias are common and may be linked to bleeding and infection. Individuals suffer differently and better individualisation of care is needed. Most MDS patient information offers scant appreciation for disease heterogeneity, variable response to treatment and each patient's likely trajectory. Aims: We undertook to discuss what matters most to people living with MDS and provide feedback on discussions in patient support programmes. The aim was to inform lived experience views on research prioritisation in MDS. Methods: We conducted a 2-part interactive online workshop using Zoom and the online platform Miro, with the assistance of a skilled technical facilitator, to replicate a face-to-face environment (eg white board, post-it notes and sticky dots for voting). Patients were invited to generate questions about their condition which they felt should be addressed by research or a change in how their care is delivered. These were then grouped into themes, and reframed to create individual non-overlapping topics. Using a model inspired by the James Lind Alliance Priority Setting Partnerships, patients voted on the importance of each topic, creating a final "prioritised" list of issues. Results: 14 participants of varying age and experience took part raising 56 unique questions under the themes of: Prognosis; End of life; Treatment; Supportive Care; Medical Staff Training; Diagnosis; Communication; Organisations; resource sharing. Using the voting system, patients prioritised 14 key outcomes (shown in Figure 1). These reflect the symptoms of MDS, improving quality of life (QoL), communication, access to healthcare professionals and individualising care. Image:Summary/Conclusion: There are few studies in MDS where QoL is the primary outcome, hence the paucity of evidence around best practice when prioritising this. Given the pervasiveness of anaemia in MDS, managing this, and subsequent fatigue is of vital importance. Although haemoglobin (Hb) levels have been found to be correlated to QoL, it is widely reported that other factors are important in determining QoL and need for transfusions can vary despite a stable Hb level. Indeed, a key finding from patient discussions showed that Hb levels and the need for transfusions is not comparable between different patients and even non-comparable over time meaning that the maximal benefit and timing of transfusions cannot be determined from Hb level alone. Better communication with patients can ensure transfusions are given to improve symptoms. Previously, evaluation of success of transfusion and the clinical decision to transfuse has been determined only by the effect on Hb levels. This workshop highlighted patient dissatisfaction with the 'numbers-led' approach and the need for an alternative method to determine when to transfuse. While studies show using liberal transfusion targets improve QoL there are conflicting results showing a prolonged increase in Hb requires more transfusions which would in turn require more time in hospital. Further research is required to define optimal transfusion policies and improved use of blood products alongside other key outcomes highlighted in this workshop. There is growing evidence that treatment needs to be individualised and with the growing use of lifestyle monitoring devices such as smartwatches, this wealth of information could be utilised to determine transfusion need.